Posts tagged ‘preemie’

Needles in a haystack

     The first winter of C’s life, his pediatrician recommended a vaccine for the RSV virus. RSV is a common cold virus that can be dangerous for preemies because their lungs are often compromised. In order to receive the vaccine, a baby has to qualify based on how many days they were on a ventilator, how early they were, how sick they were, etc. There is only one company that makes the vaccine, and there is a very limited amount produced. Every year, each doctor has to cull their patient lists and decide who gets the vaccine.

     The summer he was just over one, C contracted an RSV-like virus, and nearly had to go back on a ventilator because he was so ill. We were on the phone with the doctor’s office, at times hourly, monitoring how he was doing. We were in the doctor’s office several times a day checking blood oxygen levels to make sure C was breathing well on his own. Because he was so ill that summer, he was on the list to receive the vaccines during his second winter as well, which is fairly unusual.

     The synagis vaccine is given monthly during the winter months; where we lived, the winters are extraordinarily long, and the shots are given from early October until late May. They split the doses and the amount increases by weight, and by the time C was starting his second year of the shots, he was getting 4 shots each time we went to the doctor’s office.

     Additionally, the vaccine costs an enormous amount of money. They do, however, top out an an upper amount. We topped out near the end of the first year and for all of the second year at that upper amount, which was $3,750 per month. Per month. Thankfully, insurance covered all of that amount, but I wondered endlessly about children whose families could not afford them, whose lives, like C’s, perhaps depended on those shots.

     It’s no wonder that for a good 18 months after stopping the shots, he would scream every time we entered the doctor’s office. It’s taken years to get to the point where he would allow even the most cursory of exams by a doctor. Several times, when getting bloodwork done, it took 6 techs to make it happen. They rarely believed me when we came in; C is small and he appears mild-mannered. But they learned the hard way.

     Now bloodwork is eased by a numbing creme I put on his arm an hour before we go. In the back of my mind I wonder if this is smart; shouldn’t kids learn that sometimes there’s pain in life? Yet I figure this child has had more testing, tubes, pokes and prods in his short little life than Husband and I have in our entire lives combined, so I let it go. Like so many things with C, while we recognize the potential future impact of our actions, sometimes we have to make the choice to help him now and worry about the future later.

June 30, 2008 at 5:35 am Leave a comment


     When we first brought C home from the NICU, he was on oxygen. We lived at high altitude and had to drive over two even higher mountain passes on our way home from the hospital. We were outfitted with enough oxygen to get through the first few days and then multiple oxygen tanks arrived at our home along with cheerful nurses who checked on him daily.

     We weren’t supposed to take C anywhere, said his doc, who advised us to avoid his getting a cold in his first year. (Um, okay.) Surprisingly, we all managed to avoid colds during that year, which is kind of a miracle in and of itself. The only place we could take C was the doctor’s office, for our thrice weekly visits. Determined to get him out in the fresh air, I would put him in the front pack and sit outside on our porch, the furthest point the oxygen tubes would reach. Eventually, they brought us travel tanks, which allowed a little more freedom in terms of walking around the house with him.

     I remember my most favorite moment, which occurred about six weeks after arriving home. The visiting nurse had noticed on Friday C’s pulse-oxygen levels were within normal ranges, and we’d had to wait – over what seemed like a terribly long weekend – to confirm with the doctor on Monday that he was, indeed, ready to breathe completely on his own. We disconnected his cannula and we were on our way. We had a cordless baby. We still couldn’t really take him anywhere, but the freedom to just carry him around the house without trailing heavy scuba tanks behind us was joyous.

     To this day I still check on him at night to make sure he’s breathing, although far less than I did back then. There’s just something about having a child who can’t breathe on his own that sticks with you somehow; long after the breathing tubes are gone, there’s still that fear buried in the back of your head that you can’t quite let go. Open door, approach bed, put hand on chest to feel the rise and fall, exit room, close door. Breathe. 

April 25, 2008 at 10:35 am 1 comment

It’s all autism, all the time.

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